chronic clusters and white brain lessions

[Lloyd R.]

hello every one. I have suffered for thirty years and didn't know about this site. I thought i was the only one out there. LOL! There is some clinical stuff on the web but most of it is wrong.

So two years ago I had a MRI done at the VA Hospital in Boise, Idaho and they found I had white brain lesions. The radiologist doctor who read my scan wrote this: There are a moderate number of lesions in the white matter bilaterally mostly subcortical in location. this one in the cerebral peduncle. etiology is uncertain. Distribution is atypical for chronic deep white  matter ischemic change. most likely due to either change for chronic migraine headaches, vasculitis, or demyelaination. With this I have notice the last few years that my memory has declined. I applied for a change to my compensation for my headaches as they have become worse the last few years and I have found I need someone else to work with me at events when I can't work because of the headaches. this has become a financial burden on my family. So I guess what I'm asking is does anyone else have WML caused by cluster headaches. Or have documentation that clusters headaches cause this. Any help would be grateful. 

I have a lot of reading on this site to do to get caught up.

Thank you

Lloyd R.

[CHfather]

Lloyd,

I suppose the fact that I don't know what VML is suggests that I'm not going to have a good answer for you.  This study was posted some years back, and it mentions demyelination. https://thejournalofheadacheandpain.springeropen.com/track/pdf/10.1186/1129-2377-14-64?site=thejournalofheadacheandpain.springeropen.com  It's my could-be-wrong belief that there are some occasions in which CH has been shown to be caused by lesions, but most often it's the other way around, that CH (and migraines, which you mention) cause lesions.

A lot of folks notice memory issues. There's a thread about it here -- https://clusterbusters.org/forums/topic/4279-short-term-memory/ -- and probably others. A few posts down in that thread, Bejeeber mentions something he takes to help with memory issues.

Are you asking because you are thinking of applying for SSDI disability?

Meanwhile, let's talk about what you're doing for your CH (if you want to).  I'd bet that as a chronic you have tried lots and lots of things, but one thing we keep finding is that even with the medical/pharmaceutical things that have been tried, there has been some shortcoming in the prescription or the method of use that has kept it from being fully effective.  What's helping you now?  Oxygen?  Verapamil?  Imitrex??

Since you're just getting started here, let me strongly recommend that you read through the files in the ClusterBuster Files section, paying particular attention to the file about the "D3 regimen" (which you should almost certainly start right away) and the numbered files, which are about "busting."

 

[Lloyd R.]

thank you chfather: WML is white matter lesions: Because they didn't have MRI's back 30 years ago it just showed up. I was tested for the demyelination and vasculitis and the test came back neg. that is what i trying to prove is that the WML was caused by the CH. I'm trying to get my disability rating increased thur the VA. I haven't tried SSDI yet. Im 57 years old. The memory loss is also something I'm trying to get the VA to understand that is also could be caused by the chronic CH.

What haven't I tried for the CH. LOL! I read a AMA journal about Dr. Diamond doing a trial in Huston for the imatex and tried to get into the study. But was to late. So I waited two years till it was approved. I was the first patent at the VA Boise to try it and it was a wonderful drug and really did help with the CH. But at that time it only came in one dose 6mg and was only able to use two shots in a week. Choosing which CH was bad enough to use became a problem for me as the CH were very bad that year. I took more then I should have and it cause me to have heart problems. Which lead to be taken off of it completely. I was left in the cold with nothing to take for the CH. I head another AMA article about Oxygen and asked my doctor to order it for me. He did and I have used it for more then 20 years. And is most cases if I get it soon enough I can stop the CH before it gets out of hand. As far as meds go I have been on a lot of them. At one point I was taken up to 20 a day. And the side effects in some cases was worse then the CH. My doctor took me off all of them. My new doctor wants to go back 30 years and start over on the meds as he believes that I don't have CH but stress HA, or some other form of HA. He is a primary doc and has never had a CH patient before, so I spend a lot of time (wasted) trying to teach him about CH. I do have a neurologist and he knows that I have classic chronic CH. He has me on:

Zonisamide100mc, Amitriptyline10mg, O2/ 15 ltr, I also take as a pain med. stadol spray as needed for pain. and Lidocaine spray (which acts like a ganglion block) part of the reason he put me on the pain meds is because my business is on the road and I can't get to a VA hospital all the time. In most cases I'm 2,4,6 hours away and because I go partly blind in one eye. It puts me in danger and others on the road as I can't see out of one eye and the extreme pain. Not sure what the D3 thing is about I will search the forum.

[CHfather]

The frustrating thing, at least for me reading this, is that somehow CH is not enough of a doggone disability.  You should get a friggin medal and a lifetime pension from your organization for what you've accomplished while dealing with chronic CH. 

This study looked into cognitive impairment in people with CH, but didn't find anything significant.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4354253/  Maybe there are other studies showing different things.  An interesting sentence from it: "When patients were asked to rate the severity of their own cognitive failures, patients with CCH reported higher cognitive failures than the ECH patients, and statistically significantly higher failures than HCs." ("HCs" being healthy controls.)  But it didn't show up on the tests.

You have done your homework, so I'm just gonna say a bunch of stuff that I feel pretty sure you already know.  The one you don't know yet is the D3, which could be a game changer.  Busting has been the salvation of many folks with chronic and episodic CH.  A "last resort" that many wish they had turned to first. Do you know to try an energy shot (5-Hour Energy, for example) at the first sign of an attack?  It can stop them, or reduce their severity.  Batch says drinking icy cold water from a straw, aiming to create a kind of brain freeze, will help as much as the energy shot.  Increasingly, it is being noticed that pollen worsens CH for most people.  Many get some or a lot of relief from just taking Benadryl -- some every day, but more during high pollen seasons.

If your business on the road is by car, can't you bring a small O2 tank with you?  If it involves flying, you can usually arrange to get O2 at a destination, through your O2 supplier.  (Again -- apologizing since you almost certainly already know all this.  No need for you to reply.)  Many people get quicker aborts with higher flow rates (buying the higher-flow regulator) and from the mask made for CH: http://www.clusterheadaches.com/ccp8/

Is verapamil ruled out because of your heart issues?  The required daily dose can go as high as 960mg, which is much higher than most people are typically prescribed.  The zonisamide if of course another anti-seizure drug.  We've had some people here from whom other anti-seizure meds, such as gabapentin, have worked well . . . but for most the side effects are rough ("problems with thinking or speech; trouble concentrating" are among them).  Elavil/amitryptiline has been very positively reviewed by some folks here, at least in the short run (we don't generally hear back from folks who find something that works).  As usual with CH treatments, mileage varies all over the place.

 

 

 

 

[Lloyd R.]

Good Day CHfather: Yes I do carry O2 with me everywhere in the car, the trailer, and at the house. I went thur 60 E-tanks in just one year on the road. And a H or M tank about every five days. Now the VA worries that I getting to much O2 and that it could harm me. When I'm driving to go to a ER to get Pain meds because I have reached the end of my rope. I know that there are people out there that think that pain meds don't help or cause re- bound headaches. But I have never had a re-bound headache from pain meds. I only use it as a last resort.

Because I know that the pain is from my blood vessels swelling and putting pressure on the nerves. I have came up with a way to slow down the blood to give the vessels a chance to relax. I take a bath towel and roll it up and wrap it around my neck. I put pressure on the carotid artery and take the other end and place it at the temple on which ever side the pain is and hold it and put pressure til it ease up the pain. And then don't move til the ch is gone. This is along with the O2. This has worked for many years to ease the pain and CH.

I have used verapamil and many other meds as my doctor says is in his tool box. but have never found them to help. I have also done a lot of research on CH and willing to try anything to help even if it means going back on old meds that didn't work just to make the doctor happy. I really have been alone for so many years that I don't expect much from the VA doctors.

A few years ago when I started going blind with the most severe CH I told the doctors and they said that they had never heard of anyone doing that. They did run some test but didn't find anything. And dismissed it. I have till January to find studies or documentation to prove my claim, otherwise I will just have to live with it and the financial burden.